Special Edition: My Lung Transplant Journey February, 21, 2014 - The Waiting List

It's recently been called to my attention that I have not updated this blog since November! Oh my! But in my defense, it's been a long, long winter wrought with cold and snowy weather that essentially has kept me in the house since Christmas Day. I know some of you may be thinking, "Hey, that's the life! She must lounge around all day and eat bon bons. I wish I could do that." Trust me, no you don't. It's boring and sometimes lonely, and there is only so much bad daytime TV to watch before you start going stir crazy. But enough about all that, I'm going to share with what's happening next week.

FYI - it's not the transplant surgery because if you've been following my story, you should know by now that I'm waiting for the perfect match, and that match needs to come from a deceased person who made the selfless decision to be an organ donor. It's been nine months since I've been listed at the Cleveland Clinic, and my match still has not been found. Geez, I could have carried and birthed a baby during this time! Anyhoo, back to next week.

Starting on Monday, February 24, I will be a guest editor on The Waiting List, which is a storytelling project focused on organ donation. The Waiting List can be found on Facebook, Tumblr, and Instagram (@the_waitinglist) I came across the project by following the story of a brave young girl named Angel who has been waiting for a double lung/bone marrow transplant since July 2013. I will be sharing my transplant journey with photos and writing focusing on the challenges of living with a serious illness while waiting for new lungs, and in turn, a new life. Please join me on this journey by following me here, on Facebook or Instagram @suzib66 or @the_waiting list. Thank you!

Special Edition: My Lung Transplant Journey November 24, 2013 - In the Que

I've hit the 6 month mark on the waiting list for a double lung transplant. That's . . .

15,897,600 seconds

264,960 minutes

4,416 hours

184 days

26 weeks (rounded down)

During this time, I've discovered many things about myself. Here are just ten:

1. I'm not very good at waiting.

2. I still don't like using supplemental oxygen although it's necessary to keep me alive and kicking.

3. Eating a lot to gain weight is not as easy as it sounds.

4. I can spend hours each day doing a whole lot of nothing.

5. I cry over many things, but if it's spilled milk or messy things, I usually swear.

6. I am oh so proud of my children. They are smart, talented, athletic, funny, determined, helpful, and resilient people despite the challenges of having a sick mom.

7. At times, these same children drive me crazy!

8. I chose the best husband ever. I could not imagine navigating this journey without him by my side. I often do not give enough credit.

9. He drives me crazy too!

10. Pajamas or yoga pants are the new black.

Special Edition: My Lung Transplant Journey Oct. 9, 2013 - The Big 5-0!

No, it's not my half-century birthday! Not yet anyway. 50 is my new LAS or Lung Allocation Score, which means I'm much sicker than I was four months ago when I was first put on the transplant list with a score of 40. What is the LAS? Essentially, it's the transplant candidate's place on the waiting list. Scores range from 0-100, with 100 being the most gravely ill people on the list who are given the highest priority for transplant. However, how donor organs are matched to recipients is quite a complicated process. Many factors come into play: blood type, size of the donor and the recipient, and the antibodies of each person. In most cases of lung transplant, the donor is deceased. In other words, I cannot schedule this surgery. I have to wait for a person to die - a person who has made the selfless and generous decision to be an organ donor. "The perfect lungs at the perfect time." That's how one of my friends, who also has scleroderma and is a transplant candidate, describes the difficult waiting process. Recently, I discovered this video that explains organ donation in a straightforward and simple way:



Just in case you skipped the video, here is a chart that explains the transplant process:

Wow! That looks easy on paper, doesn't it? But it's a long and challenging journey! I sometimes feel if I can endure all the ups and downs and the twists and turns on this bumpy road, the actual surgery might be a walk in the park. Luckily along the way, I've met many inspirational people who are lung transplant survivors! Here is a photo of me with three survivors at a summertime U4Sue! New Lungs New Life fundraising event. These three dear people are a wonderful source of support for me, and I'm so happy to know them.

Joan, Roseann, Rick and little ol' me at the summer soiree in August.

Just a few notes: We have been truly blessed by so many people who have supported the U4Sue! campaign by attending events or making donations. As you can see by the thermometer to the right, we have raised more than $8,000! Keeping in mind the uncertainty of our health insurance plan (due to changes that might occur with the Affordable Care Act) as well as the unpredictable nature of the waiting period, which may require many more visits to the Cleveland Clinic than we anticipated, we've decided to increase our fundraising goal to $15,000. The next event on the calendar is a movie night FUNdraiser on Saturday, Oct. 26, 7 pm - 10 pm, at Community Christian Church in Montgomery, IL. We are seeking volunteers to help at this event or to donate items such as wrapped bite-sized or fun-sized candy, bottled water or pop (small and regular sizes), bright colored napkins and straws, and long glow sticks. Here is an online invite with more info:

Invite card customized with Smilebox

You also can check out the event page on Facebook or send me a message here by clicking on the email button, then I can happily fill you in on all the details. Thank you!

Quote of the Week: Gratitude

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

~ Melody Beattie, self help author

What are you most grateful for? Take the 30 day gratitude challenge during this month of thanksgiving. I'm posting my blessings on my Facebook page each day, but you don't need FB, a blog, or a fancy electronic device to note your blessings - a journal, a scrap a paper, or a quiet moment alone with your thoughts will do.

My post on Day 4: Today I am thankful for a son who understands when his mom can't go to his soccer game because it's too cold outside, and she's not feeling well . . . I missed him score a goal :(

Please join me on this journey. From this day forward, I will post my blessings on both my personal FB page and the leMOMade page, where you can post yours as well. I also invite you to follow this blog on Facebook or by email by using the tabs to the right. Thank you!